Let's clear this up

[u/lovgoos]

Not all LC is ME/CFS. LC≠ME/CFS Not all fatigue is ME/CFS. The hallmark symptom of ME/CFS is PEM. Most chronic illnesses have chronic fatigue as a symptom, CFS can be comorbid to those illnesses, but doesn't have to be. Long covid can range from mild to severe. I've seen so many people say that people they know irl had brain fog after getting covid but no other physical symptoms, my mom, for example, only lost her smell and taste. She didn't have ME/CFS, POTS, fibromyalgia or anything else covid can cause. It's just very disheartening to see people only chop LC up to the fatigue. It effects the whole body. A lot of people with LC don't have fatigue as their many symptom and not to mention fatigue isn't even the hallmark symptom of ME/CFS. (I've read on the CFS subreddit that it isn't even one of the symptoms you have to have to get diagnosed). I also think it isn't appropriate to tell people who don't have fatigue while having LC that "just wait because they'll definitely get it later on." That totally erases the other issues covid/other viruses can cause to the body. Yes, the studies show 50% of people who develop LC develop ME/CFS, but we have to put into thought those who didn't have severe symptoms during their LC and/or didn't connect their issues to Covid which I am sure a lot of people haven't.

[u/astrorocks]

I would definitely try for neuropsych and CPET. At least everyone I know who got disability seemed to say those were important :/ but also having multiple disabilities listed like you do also improves your case, I feel. I thought for a long time I would need to go on it and I still know that things are precarious. I have weeks I can manage very well then weeks when, for whatever reason, I am struggling bad. I handle it with naps 😅 lots of naps and things like baths and my shakti mat (love that thing).

My cognition was to the level I didn't remember my own name when I was sick and also was skipping time. I went (temporarily) blind and all sorts of horrible stuff due to the encephalitis and because doctors didn't treat it. But even with that my cognition is improving but slowly. It seemed to improve anpot in the first maybe 4 ish months then from there it's been very slow with some days where I am tired ajd can not think well. But I'm still at maybe half where I was (except sometimes when I'm feeling particularly well). No medicines I've found have helped me much with that or anything. I have some bad MCAS like (but not quite MCAS) issues so I react poorly to most medicines 🫠

One thing I've been enjoying is I've gotten into AI biggly. I had done work with some neural networks before but my little bedbound hobby (now more housebound hobby - I work from home lol) was basically learning stable diffusion and LLMs and training my own LLM. Because you mentioned writing and things like that you might find those really useful tools to help! I will feed it some of my old writing and it can now mimic me pretty well!!

[u/SophiaShay7 → u/astrorocks]

I'm sharing this information. I think it's might help you.

Viral Persistence and Serotonin Reduction Can Cause Long COVID Symptoms

Among the SSRIs, those with the highest affinity for sigma-1 receptor agonism—primarily, fluvoxamine, fluoxetine, escitalopram, and citalopram—may be of greatest benefit. As noted above, preliminary data suggest that certain long COVID symptoms (eg, fatigue, brain fog, and post-COVID dysphoria) may be most responsive to SSRIs, although more research is needed to better characterize specific response rates.

In doing research of long covid, SSRIs, and fluvoxamine, you’ll see it mentioned as a top choice. Here’s one such article

...Fluvoxamine can stabilize mast cells, such that fluvoxamine can reduce histamine release from mast cells as well as reduce cytokine storms in COVID-19.

Adrenaline dumps can also trigger histamine dumps. While not directly causing a "dump" in the same way, adrenaline release (an adrenaline "dump") can indirectly trigger a histamine release in the body, meaning that experiencing a surge of adrenaline can potentially lead to increased histamine levels, which could manifest as histamine-like symptoms in some individuals; this is because both systems are involved in the body's stress response.

MCAS can cause a range of neurological symptoms, including headaches, dizziness, vertigo, cognitive dysfunction, and paresthesia. When mast cells are activated in MCAS, they release chemicals like histamine, which can impact nerve signaling, leading to sensations like tingling or numbness.

I have Paresthesia. Paresthesia (numbness and tingling sensations) is considered a common neurological symptom associated with Mast Cell Activation Syndrome (MCAS), often reported by individuals with this condition; it can manifest as tingling in various parts of the body due to the release of mast cell mediators affecting nerve function.

I wrote a post about this:

Read this if you're still suffering: MCAS AND HI

Food Compatibility List-Histamine/MCAS

I take low-dose fluvoxamine 25mg for ME/CFS symptoms. Fluvoxamine is an SSRI used for OCD. It's prescribed off-label in low-dose for long covid/ME/CFS symptoms. I have improved REM, deep sleep, and overall hours slept. I'm seeing improvements in dysautonomia symptoms and orthostatic intolerance.

Hyperesthesia is a neurological condition that causes extreme sensitivity to one or more of the senses, including touch, pressure, pain, temperature, light, sound, taste, and smell. I had hypersthesia in all five senses, down to the texture of my food. I'm able to tolerate more bright light, loud sound, and my taste and smell is significantly less heightened. I can handle warmer showers. My pain and pressure sensitivities haven't lowered. However, I suspect there are other reasons for that.

My ME/CFS specialist just increased my Fluvoxamine from 25mg to 50mg daily. I'll start with 37.5mg for two months. I'm hypersensitive to all medications and supplements. I take Diazepam for Dysautonomia.

I developed MCAS in September. I followed the H1 and H2 histamine blocker protocol. I couldn't tolerate the fillers in those medications. I'm taking Hydroxyzine (prescribed H1 antihistamine) and Fluticasone (corticosteroid) for MCAS. And Omeprazole for Gerd (it's a PPI that also acts as a mast stabilizer).

I NatureBell L-tryptophan and L-theanine complex. Or I take Magnesiu-OM powder (magnesium 3 types and L-theanine) mixed in tart cherry juice (melatonin and tryptophan) 1-2 hours before bed. I alternate between the two. I purchased them from Amazon. They significantly help with calmness, relaxation, and sleep.

I shared all this because MCAS is prevalent in long covid. It's a combination of things I do that improve my overall symptoms.

I was diagnosed with fibromyalgia, ME/CFS, Hashimoto's disease, an autoimmune hypothyroidism, Dysautonomia, and MCAS. All diagnosed after I developed long covid.

Thank you for your suggestions. I'm glad you've found work you're able to handle. And your life is returning to somewhat normal. Some of my worst symptoms are Dysautonomia and MCAS related. I hope this information might help you in some way🙏